USA Long Covid Action Project

[Yann04]

sorry for writing so much, I’m coming off arguing with all those bloody LCAP ppl about viral persistence!

mood

 

[Trish]

sorry for writing so much, I’m coming off arguing with all those bloody LCAP ppl about viral persistence!

Thank you @RaviHVJ and @Yann04 for informing us about this group. Definitely one to steer clear of.

 

[Sean]

What I absolutely agree on is the notion that patients shouldn’t force policymakers to pursue a specific hypothesis.

Indeed. But what we absolutely should do, and have every right to do, is demand robust technical standards, and that any research findings are not applied in the clinic, medico-legal hearings, or policy advice until they meet that standard.

 

[Yann04]

Yes. I think the equivalent of LCAP in ME/CFS, would be if a charity claims that ME/CFS is a disease caused by the mitochondria. And tries to lobby policymakers and researchers to abandon all other routes and only focus on the mitochondria. Going as far as to claim there is no point in researching all the other abnormalities in ME as they **must** be caused by the mitochondria.

A charity that fights against psychological or FND type portrayals of ME/CFS in that sense is much different.

 

[Trish]

I think the ME/CFS equivalent would be the hard line 'real ME' organisations who insist it's caused only by chronic infection with specific enteroviruses.

 

[Yann04]

I wish there was like a requirement of having to atleast read one major review of long covid, such as this wonderful piece:

Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 21, 133–146 (2023). https://doi.org/10.1038/s41579-022-00846-2​

And to read some sort of essay that touches on ableism, chronic illness and acceptance. Before people start going online in long covid communities and preaching their “theories” on research like an aposle and insulting people for accepting they have a chronic illness.

I know I shouldn’t let this behaviour get on my nerves. But since I’m bedbound and unable to speak, most of my social contact is through these online communities…

 

[Trish]

You are quite right to be upset by such posts in Long Covid communities, Yann. I'm sorry to hear that's not being stopped by moderators. We certainly don't allow such behaviour here, so you should be safe here.

I think if I were joining an online community other than this one, I would want to check out their rules and whether they are actively moderated, or whether you are able to block or use an ignore setting for known problematic individuals so you aren't subjected to insults and false claims.

 

[Yann04]

Yeah this place here is really my safespace. Thank you all for all the effort you make in moderating and keeping it so

 

[Yann04]

I’m a bit concerned with the Sick Time’s Rpeorting of Long Covid. They seem to be doing a decent job, but consistently mention LCAP in a positive light in their articles.

 

[Yann04]

Also I calculated exactly what LCAP’s demand of 24 billion for LC at the NIH is equivalent to, and it is more than the yearly budget of the NIH
all cancers, all mental health diseases, all autoimmune diseases, all forms of dementia; AIDS, heart disease, and ALS put together.

Data can be found here:
https://report.nih.gov/funding/categorical-spending#/

 

[rvallee]

I’m a bit concerned with the Sick Time’s Rpeorting of Long Covid. They seem to be doing a decent job, but consistently mention LCAP in a positive light in their articles.

There are two similarly named organizations, I think they're citing the legit one.

 

[Yann04]

There are two similarly named organizations, I think they're citing the legit one.

They also cited the “Longhauler Advocacy Project” in their recent coverage, but cited LCAP multiple times:

One letter by the advocacy group Long Covid Action Projectasking the NIH to consider corrections and retraction

the Long Covid Action Project (LCAP), has requested $28 billion in funding

​

 

[SNT Gatchaman]

There are two similarly named organizations, I think they're citing the legit one.

The Longhauler Advocacy Project is here. Board of Directors listed here.

Karyn Bishof - Founder and President
Karyn Bishof is a first-wave March 2020 Longhauler, mixed-indigenous single mom, and now former firefighter/ paramedic due to Long COVID and its associated conditions. Karyn served on the National Academies of Sciences, Engineering, and Medicines (NASEM) committee tasked with developing the U.S. Government's definition of Long COVID, and serves on the NIH RECOVER Initiatives Ancillary Studies Oversight Committee, and as an external contributor to the AHRQ Long COVID Care Network.